Just diagnosed - No idea what to expect

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  • Andy13460
    Andy13460 Member Posts: 115
    #22
    Hi OKC native

    Sorry you are here,

    Ive just finished tretment last Wednesday in ireland for base of tongue SCC and lymph nodes HPV16+

    So it sounds like they suspect a tumour in the base of your tongue this could be the primary. the scans and the biopsy results will let them confirm this but it sounds like you might get away with probably 3 doses of Chemotherapy and  35 lots of radiation over 7 weeks. Im not going to comment on symptoms because I come from a running backgroung and was very fit coming into this, I didnt suffer as much as some but I did put about 20 lbs of weight on before treatment started. I did see a good dentist before treatment. I didn't use a feeding tube but thats down to the Irish system they like to keep the swallow working. I was suprised how quickly the 7 weeks went once treatment started. You will find loads of advice here as you go through the procedures, good luck with everything.

    Andy

  • lewcap
    lewcap Member Posts: 23
    #23
    m_Lundin said:

    You can do it!

    Good luck OKCnative!  You can do it.  I just found this forum today. Such great responses and people!

    You're smart for checking here for what to expect and start your support network.  I was in such shock about my diagnosis and just wanted to get on with treatments that I didn't think to find out any information on-line. Luckily I took the advice of my oncologist and got g-tube and IV port implants.  A friend of mine went through all this 5 years ago so I had a fantastic resource to help me out. He recommended getting the g-tube and IV port implanted ahead of time. Both made it much easier in some respects to get through this far, especially when I couldn't eat any more and also when I needed hydration between chemo sessions. Each has their anoyances, but it was better for me than having to get them implanted during treatments. I had them removed in mid May.

    My Oncologist said the treatments are "wickedly intense" and it would be a rough 6 months, but the radiation is very effective and the cancer very curable. He wasn't BSing and it helped me mentally get straight.  

    I finished 35 rads and only 2 rounds chemo April 7, 2017. Cisplatin can be a bugger. I'm completely deaf in my leaf ear, and the 2 rounds of Cisplatin caused damage to the hearing in my good ear as well as increased Tinitus.  I also lost 50lbs in the 7 weeks of treatments. I'm very thankful I don't need surgery at this point. I had 2 lymphnodes with cancer on the left side of my neck and one on the right side on the Carotoid. Biopsy confirmed HPV. Main tumor (small) was found through PET scan on base of tongue. I go in July 10 for another PET scan and find out results from my ENT and Oncologist on July 11.  I'm praying for the best, but I hate not knowing. The hardest part now is no taste and no saliva. I really miss the taste of food and hope both taste and saliva return. Right now I think that is the hardest part to deal with. I loved to eat and cook and am trying to figure out this part of recovery.

    The ray of sunshine and hope that helps keep me positive is my friend is 5 years cancer free!  Since going through all this I've learned about many more who have endured and are cancer free. Many for 15+ years. It sounds like treatment options have progressed over the past 20 years and they don't take the drastic approach of surgery unless absolutely necessary.

    I wish you the best of luck. Please reach out to me if you need to talk.  

    Mark

     

    new member(s)

    I am  so glad and relieved that I found my way here. I've had a 12 1/2 hour surgery and am now on week 3 of radiation. I bounced back fairly well from surgery. Radiation is doable thus far,but it's very hard. I think this site and you people will be a huge help. Right now, I feel lonely and isolated... Issues right now are some I've seen here: neck and shoulder pain (both intense and not much helped by drugs), mouth discomfort, returning swallow difficulty, and the speech that had improved greatly after surgery is deteriorating. therapists say to watch beating myself up, that things will improve again, etc.

    Just want to say thanks for being there/here!

    Martha

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